Alexithymia, EMDR, C-PTSD, insomnia and neurofeedback

[Jeffrey Lawton]

OK I'm brand new here, would like the benefit of the wisdom of anyone with experience who could enlighten me. I'm "retired" (or at least I get regular Medicare), I've been diagnosed as certainly having C-PTSD resulting from the extreme emotional abuse of my late mother who had multiple cluster B personality disorders besides NPD, in fact my hypervigilance insomnia is so severe that I won an SSA disability award for the fatigue and because I don't sleep AT ALL without taking my prescription of seroquel just before bedtime which is a strong antipsychotic. I went through about a decade of conventional CBT therapy that had almost no effect, so I went to a trauma therapist for about 9 months before I gave it up because at the end of the hand movements she would ask "how does that make you feel now?" and that was when I discovered that I was alexithymic too! Actually the first time I heard of the term was when I was reading

"Neurofeedback in the Treatment of Developmental Trauma: Calming the Fear-Driven Brain"

by Sebern Fisher which I found referenced on the website attachmentdisorderhealing.com (I don't want to get into a terminology war but the terms C-PTSD, developmental trauma and attachment disorder are closely related). So I went to that website and it directed me to a couple more where I was able to find a neurofeedback therapist who uses infra-low techniques and who was also aware of the techniques in the above-mentioned book. I've only had 3 sessions so far and the results are pretty inconclusive but I'm told it's way too early to expect anything major. So anyway I was wondering, does anyone know whether alexithymia can be induced by extreme trauma or relieved by something that helps you deal with it? Has anyone here tried infra-low neurofeedback to treat alexithymia or even considered it, why or why not? The lady who runs that attachment... site makes a good case elsewhere on her site that NF does a decent job on development trauma, heck the forward of the book was written by Dr. Bessel van der Kolk who is a leading authority on developmental trauma, but I don't really know if there might be a relationship between alexithymia and any of these issues nor had I even heard about piracetam or nootropics before I got here. Maybe I could enlighten someone here or you could enlighten me?

[kurokawa8]

I've done hemoencephalography HEG a form of neurofeedback similar to EEG neurofeedback.  https://groups.google.com/forum/#!topic/exchange-forum/GiDGCclcbto

It definitely works for frontal lobe activation.  I'd recommend getting a SPECT scan to see if you'd benefit, those arent covered by insurance and they arent cheap.

PTSD, trauma, and asperger's type symptomology can be shared with low frontal lobe blood perfusion AKA ADD/ADHD, in which case neurofeedback is wonderful for.

My personal experience is that HEG is beneficial but I never stick with it for long periods.  I think my body makes me quit for some reason.  Maybe the brain shouldn't be changed so radically so quickly.  I don't know.  something just makes me stop after a while.

For all I've done I've had glimpses of experiencing emotional discharge but I haven't cured alexithymia.

[Jeffrey Lawton]

Well what I think I understand is the general idea of EEG neurofeedback is to "rebalance" the amounts of the different brain wave rhythms. In the case of developmental trauma the brain has essentially been in full-blown panic mode since sometime in childhood so the beta waveforms are way too high, and in my case I guess the amygdala is just cranking out large amounts of cortisol into the bloodstream therefore I constantly feel "wired" and my muscles are constantly stiff and I have complete hypervigilance insomnia in addition to the complex trauma, anxiety, depression and alexithymia. I've had a few more sessions now and I guess I could say my muscles are starting to "learn" to relax. What I'm trying to figure out is my alexithymia is kind of a side effect of all the other conditions (and I suspect a high percentage of folks with developmental trauma have it and don't know they won't be able to find "conventional" forms of therapy that work). I'm just thinking there are other "contexts" (for example TBI) where this condition comes up and maybe is way more common, my comments will be far less relevant in other contexts so I want to be clear that what I'm talking about might be better directed to other audiences but if I happen to "catch" anyone coming into this group with my background then that's really who my comments will be relevant to. But I appreciate the discussion about HEG, I don't know much about it but it's great to learn about all these therapies if only for reference.

[kurokawa8]

Ah kk. Hemoencephalography appears to be different.  I haven't tried any brain wave stuff except for audio meditation CDs which for me had limited success. 

Have you considered Somatic Experiencing for PTSD?  Peter Levine's books "Waking the Tiger" and "In an Unspoken Voice" are must-reads. The reviews on amazon tell the story pretty well.

After all the years I've been working on my PTSD/Alexithymia/possible asperger's or asperger's-like symptomology I'm starting to be a believer in medication. Do you take any?  Is it helpful?  I've recently started Cylexa and Gabapentin.  I'm also taking adderall for overall brain underactivity.  I find the gabapentin/cylexa helpful for reducing hypersensitivity.  Adderall helps with my energy, attention span and reading ability.

[Jeffrey Lawton]

This is getting into areas that to me are interesting because my developmental trauma tends to manifest as brain OVERactivity. Then again having spent a decade trying and failing to find therapy that was in any way effective, I can say with some certainty that I'm WAY too alexithymic to "experience" much in trauma so somatic experiencing for me (and others in my situation) would almost certainly yield a total zero in terms of results. There again one of the benefits of this infra-low EEG is the individual brain wave rhythms can be to a large extent stimulated OR diminished. As far as medication I also have hypervigilance insomnia (having it won me a 5 digit SSA disability award because the fatigue from never sleeping made me unemployable) and the only candidate drug that I didn't have withdrawal/tolerance issues for was a low dose of seroquel (I take the generic kind, also available in Extended Release) which is an antipsychotic that works by being an antagonist to three separate types of receptors. I would recommend going to eeginfo.com or esiaffiliatesforum.com and look for a practitioner of infra-low neurofeedback and get some therapist contacts and see what they have to say about what they know about treating people who demonstrate symptoms similar to yours, it's only a phone call or email, I do know they are effective for situations like PTSD and ADHD and several kinds of substance abuse.

[Mimosa UK]

Hi there, I’m new on here but have dipped in and out looking at Alex sites online for a couple of years. I find this particular post very interesting but welcome any reply from anyone! I am from the south east in the UK, so neurofeedback etc is something not recommended for PTSD on NHS. Obviously economics comes into the NICE guidelines! The significance of the difference between Developmental trauma or CPTSD is not sufficiently recognised. However, I read your post and I connected somewhat as I have been in therapy for developmental trauma for five years (private psychotherapy) but am beginning to realise ( hence joining this group) that the prominant sustaining factor is alexithymia. I have just turned 50, so as you can imagine I have gone through a lot of my ( traumatic) life oblivious to the fact that I had alex or was even traumatised!!!! It’s so nice to see lots of young people on here for that reason alone, they are at least aware that something is not right there. I wish I had found out sooner. Despite this I have no official diagnosis of anything despite regular trips to the GP for sleepless nights, nightmares, hypervigilance, unexplained rashes on face and neck, and chronic lower back pain. I have been prescribed propanolol for anxiety and because all tests for bone marrow cancer and vitamin D were ok I have an MRI scan for my back due. I am too scared to mention trauma or alexithymia to them for some reason and it’s been so long now. I have also read Peter Levine, Van def Kolk and read a lot about attachment. Judith Herman Trauma and Recovery is another good read ....she coined the term CPTSD. So your question about what is the overriding condition and has one caused the other ( sorry I know you didn’t put it quite like that) I think the developing brain is far too complex in itself with the right environment, so a developing brain in a ‘not good enough environment’ becomes ....welll ... even more complex than complex? A really good book is ‘The a NeuroScience of human relationships. ‘by Cozolino.